Recent studies characterized a clinically more severe and painful (compared to painless) form of restless legs syndrome (RLS). Data comparing pharmacological treatments in patients with painful and painless RLS are scarce. The current study investigated long-term opioid treatment in patients with painful versus painless RLS.
Methods
Data were extracted from the National RLS Opioid Registry, an ongoing observational longitudinal study of adult patients with a confirmed diagnosis of RLS treated with opioids. Painful RLS classification was based on a “Yes/No” response to the question: “Would you consider your RLS to be painful?”. Baseline collected data included age, gender, ethnicity, body mass index, education, RLS family history, age at RLS onset, augmentation history, and International RLS Severity Scale (IRLS). Both RLS concomitant treatments (alpha-two-delta, α2δ) ligands; dopaminergic agents, DA) and RLS opioid treatments with daily dose in morphine milligram equivalents (MME) were collected at baseline and after two years.
Results
Data for 447/500 initially enrolled RLS patients (146 painful and 301 painless RLS) were available after two years. Painful (versus painless) RLS patients were less frequently White (94.5% versus 98.3%; P=0.0347) and had more severe RLS symptoms at baseline (IRLS scores: 16.6±10.0 versus 11.3±9.1; P< 0.0001). Frequency of patients on concomitant DAs or α2δ ligands did not differ between the two subgroups at baseline or after two years. The mean daily opioid dose (MME) did not differ between the two subgroups at baseline or after two years. The frequency of patients with MME ≥50 was higher in the painful RLS subgroup at baseline (27.4% versus 18.6%; P=0.0338) but not after two years. Painful RLS patients either increased or decreased opioid dose (65.1% versus 53.2%; P=0.0170) and more frequently switched, added, or discontinued opioids (25.3% versus 15.6%; P= 0.0135) after two years.
Conclusion
Whether the higher need for change in opioid dose or medication in patients with painful RLS is related to the severity of RLS and/or lack of efficacy remains to be determined.
Support (if any) The National RLS Opioid Registry received support from the RLS Foundation, Baszucki Group, and Jerry Blakeley.
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I'm in that study and remember thinking at the time, "how do we quantify pain?". My RLS is 96.42% relieved by my medication. But-- if I take a trigger-- msg or alcohol. I'm in HELL.
Pain??? Discomfort,??
If I put my hand on a red hot iron - I experience pain -- real pain that can not be escaped from. It burns into my brain and invades every fibre of my being.
The discomfort of RLS is a real nuisance and drives me literally up the walls-- I have to lie on my back on the floor with my legs crawling up the coldest wall available. The colder the better.
So-- not really much use to anyone-- but I've always been intrigued by how pain is measured.
Not the 1 to 10 used in hospital- something a bit more scientific!?
At the risk of stepping into a discussion where I will reveal myself to be ... uh inarticulate, I would like to add that I agree with Madlegs. Quantifying pain ain't so easy, especially when it comes to RLS. When the pain is caused by a burning iron, even the 1 to 10 method seems lacking and imprecise. Let's see, if I say 11, then they will help me quickly. And, unlike RLS, a red hot iron will likely leave visible marks. RLS is a totally different animal. How many members on this site have been asked by a doctor to describe their symptoms? What's the answer? "Oh well, its this creeping feeling in my legs and it makes me very uncomfortable and agitated and I don't know. It's very difficult to explain."
Even when you try to describe RLS to friends, they go glassy eyed and often don't take it seriously, just like most doctors. When it came to RLS, only my wife really understood and believed me. She unfortunately experienced all the pacing and ill humor. "How is your RLS this morning my love?" "It's a 9 or maybe an 8. No, an 8 and a half. I don't want to talk about it!"
Then there is physical pain and psychological pain. What happens to a person after not really getting a good nights sleep for 30 years? Up all night more than one can count, waiting for the sun to come up so they can go to work exhausted. How is that measured? I don't think I ever had a doctor, aside from a psychologist, inquire about my mental health. This kind of pain doesn't leave a visible mark either.
Oh boy, maybe I have gone completely off the rails. If you have read this far, I am sorry to have ranted so long. However, I would like say that what I love about this community, aside from the incredible help and support I have gotten, is how healing and comfortable it is to read other people's RLS stories. I understand their pain and their suffering and I believe they understand mine. The first week I discovered this site, I cried so much in relief that I was not alone. And I am crying now. Thank you everyone! Rivers
Excellent explanation of the torture of this disease and how difficult it is to explain to someone who has never experienced it!I often have nightmares thinking of children and babies with RLS and those with RLS and dementia, who cannot articulate what is upsetting them or keeping them walking up and down in the night. I carry a note on me at all times, in case I'm in an accident and they treat me incorrectly.
I still remember the poor guy who posted on here that he was going through severe augmentation on Pramipexole and made the mistake of going to Slough A&E in the UK. He was so distraught & agitated that they strapped him down to restrain him.
I actually wrote a complaint to the hospital, but, as I wasn't the patient, they didn't bother to reply.
Well RiversW I was in shock when I saw this post on PAIN and RLS!! I to am crying reading the post and your reply is what started my tears 😢 you are 100% right about all! I am in USA and have had this dreadful dis “ease” for 30 years to! I thought I was going crazy when it first emerged into my life! With each trauma to my body it came out worse! However now in the last 10 years maybe I associate it with pain! When I start getting an episode it feels like an auger in motion in my butt, low back,groin down my leg into my foot! Then the demon comes with the jerky movements and I can’t sit or lay down! I to crawl on the floor and it my legs up on anything! I was shocked when I read your post bc I was just thinking about my situation and thought I’ve never read anyone’s RLS issue similar to mine. All of it the physical and psychological “trauma” living like this for so long and you feel alone… even though your spouse or family/friends know and see etc I feel they still don’t understand or get the magnitude of what this ridiculous thing does to US!! Doctors included. My story at this moment in time is to long I want to tell what I’ve been through in the last 7 months but I’m crying so much right now I can hardly see the letters on my phone keypad. A maddening story for another time my friend. Imagine this dis “ease” has been known about since the 18th century and the medical profession is still in a quandary. Oh take this they that blah blah blah… for years I was treated for chronic intractable pain . As well as RLS but doctors weren’t diagnosing it as a complete condition that was together. Hope that made sense?? After almost 30 years of being on opioids the incompetent doctor I was seeing for the last few years abruptly stopped my pain RX ! She gave me my next months supply and told me basically to go F myself!! Accusing me of having cocaine in my urine!! Doing a rapid test which she never did before!! I was shocked to say the least!! I’m 60 years old I wouldn’t even know where to get said cocaine!!! I believe she wanted to get rid of me and that was her office managers idea of doing so!! I said it was a long story this is just the beginning of….. I went through hell and back and hell again!! At this moment in time I’m deliriously in a state of never never land! There are days where I don’t know how I function. I can’t think I can’t concentrate on certain tasks I cry a lot. I am in pain from other issues I suffer with and my demon makes me suffer even more!! My husband wants to do things with me and he says well we can’t bc you can’t walk etc etc. He goes on trips sometimes without me. It’s hard to accept bc I never thought at 60 this would be my life. I am in general a very happy person and always active when I can be. I love gardening and it is a major challenge for me now!! Ohhhh friends on this site thank you all for letting me share and vent rant vomit here!! At this time I’m actually 500miles from home we took a short vacation from New Jersey to Virginia Beach I dreaded the ride down and now I dread the ride home today!! Although I did find a neurologist who has just started to help me. She agreed to give me a low dose opioid for this trip. Because I’m sure all of you know being cooped up in a car or airplane could and will be a harrowing trip!! Ok I digress bc I have to go pack to leave. Pray I make it without incident. Thanks for reading my craziness…. God bless everyone on here. One last thought I really was shocked when I saw and started reading this bc it truly was exactly what I feel etc.
Please call me Rivers (lol) I am so sorry for all of your suffering and I hope you will find some relief very soon. If you go back and read some of my earlier post you will find that what finally helped me was Buprenorphine. If possible, I suggest you ask your neurologist about it. Maybe it will help you. Of course, you never know what barriers you are going to run into trying to get a prescription, but I wish you luck.
Thank you so much for sharing your RLS history here. You made me cry as well. I have found this community to be the best help for what ails me. It is comforting to at last find people who understand what we have been going through. To not feel so alone with this horrible disease.
Take care and I hope your trip back home was not agonizing. Rivers
I absolutely agree mMadlegs. It's about how pain in quantified.Insidiously unbearable 'discomfort' that can only be alleviated. (without eff active medication), by taking one's own life?
That is fascinating. It would seem to follow the existing knowledge that opioids for pain relief lose effectiveness as 'tolerance' develops. Whereas that does not appear to happen to RLS patients who do not report 'pain' as part of their RLS symptoms. Just shows how much more research is needed!
That is interesting, about opioid tolerance in pain patients vs no tolerance developing in RL patients. I take methadone, 3 mths now, and cannot now fathom how I could ever manage without it. When I read posts like yours I feel a massive sense of relief from the reassurance, and like RiversW it brings me to tears. What a terrible sad story about the man restrained at A&E. I will get a little card made up to carry around, as you do. Thank so much for helping us all.
Yup. It's why I always advise people going through severe augmentation and withdrawal from dopamine agonists NOT to go to A&E or ER departments. The ignorance & lack of knowledge amongst medics in the UK ( and elsewhere) would end up causing more suffering. Terrifying.
Well i experience pain it’s the only symptom i get apart from the urge to move. It’s a deep ache feels like in my calf muscles or my foot or my thigh depending on which leg it decides to drive me nuts. If meds are working then i don’t get the pain. I used to get the creepy crawling sensation where felt like something in my legs was moving but it changed to this pain
That's why we need detailed research, lots more funding and new treatment options. There seem to be quite a few members who report the initial creepy crawly symptoms switch to pain.
I wonder why it changed to pain. I think it should be added to the criteria on the big fb group so many people don’t seem to think pain can be RLS as it’s not mentioned in the criteria so they don’t believe it you mention painful RLS. So yes more research definitely better meds but i think those that do the research are at a stand still. The med that was being studied that would stop dopamine meds augmenting not heard anything for a long time on that maybe funding or it just not going to work ?
Ecopipam. Stephan Clements at East Carolina University was studying it, and applied for a patent. But it's all gone quiet.Pain is mentioned on RLSUK, rls.org and on NHS and NICE guidance. Hopefully the FB groups will update their explanations so people will understand pain is definitely a symptom for many.
I used my daughter's FB page to join & see some posts and it's clear that many on there refuse to accept DAs cause augmentation. Sadly, they'll soon learn. The old saying, You can take a horse to water springs to mind.
Every day many people on that big group i take it is Tina’s group you looked at , Restless legs Syndrome is the name, are moaning they didn’t sleep RLS is driving them crazy then you find out it’s augmentation from a DA they are taking.
"The old saying, You can take a horse to water" That is so true. Even on this site. You can advise someone and they ignore you - like slowly coming off a DA and they keep coming off it too fast and complaining. Drives me up a wall.
I don't either, so when using my daughter's account, it is horrifying to see how many are clearly in denial. And every new person is put on Pramipexole and the other posters congratulate them and tell them it's brilliant. Until it isn't....
All those fb groups have admins including the person who set it up. Believe me i am forever giving out information on the dopamine meds it’s exhausting. There are files with information on RLS it has the mayoclinic latest up to date information which i tell people to look at. Then you get when someone posts they are not sleeping and all the wonderful i take this and it works people. I do the asking what are you taking etc speach. Although there are one or two who do know what they are talking about and give good advice. I have even recommended people join over here to get better help and advice. 😊
I think FB is a completely different concept. I'm sure there are posters, like Elisse, trying to inform them of up to date information, but it does seem to be full of very strongly opinionated people. Sadly, they will all experience augmentation or ICD, it's simply when, not if.
Exactly my sentiments! Mine also will start on one side and just when I think I can sleep 💤 it starts on other side!! Then sometimes (a lot) back to other side!! It’s just such an insane feeling of pain and suffering to go through then to have to explain is even worse!!!
Until I read this thread, I had never thought about a distinction between painful and non-painful RLS. Again just like everything else associated with RLS, everybody's experience seems to be so different. For me, I never had what I would call real pain until I had been augmenting on dopamine agonist for years. Of course no doctor explained that that was what was happening to me. The pain came in the form of burning. I'd had mild burning in my feet for years and was always told it was neuropathy caused by a source that was never found. About 4 years ago the burning became much more severe and would show up in different parts of my body. Like an extremely bad sunburn in my feet, thighs, shoulder or above my right eye. A pain that never went away. Strangely, the classic symptoms like twitching and agitation were seldom present when I was burning. This is when I really started to go downhill. I was desperate. Open windows looked inviting. My neurologist started throwing different drugs at the symptoms, constantly adjusting my Neupro dose. Nothing worked. If the burning did abate, the horrible sensations in my legs and arms returned. I preferred the burning. The classic symptoms of RLS drove me out of my mind. Even though it did not "hurt" , the agitation and creepy crawly sensations were shear torture. And then thankfully Buprenorphine saved me. Now, most of the time, I am free of all RLS symptoms.
I guess all of this rambling is to say once again that defining and classifying pain is incredibly difficult and so subjective. People's symptoms are all over the place. Often misdiagnosed or discounted. I wonder if this is part of the reason so few studies are being done. As a disease, RLS is so difficult to pin down and to treat. Of course, it doesn’t help that as a group we seem to be almost invisible to the medical community. Does this make RLS research an unattractive investment? If thats the case, at the least a priority could be given to educating doctors on how to better treat RLS. Rivers
And here's something else that is interesting in that regard as reported in NightWalkers Spring 2023 a publication of the RLS Foundation. Painless RLS was associated with iron deficiency, but painful RLS was not. Painful RLS was associated with other pain conditions such as migraines and abdominal pain whereas painless RLS was not associated with pain disorders.
I definitely don’t have migraines or any abdominal pains unless IBSD is classed as abominable pain the griping pain. But i have suffered with it since i started work it’s stress related.
What really makes it hard is all the iron deficiency posts, studies etc but nothing about association of pain & RLS!! Like you say horse to water blah blah blah 😒
I went on my first DA (Pramipexole) in 2006 & for many years it helped my non-painful RLS. When augmentation began I was then prescribed the Neupro patch & told that this would be kinder for me. It was only after I augmented again & slowly weaned myself off that the pain started. It began in my knees alongside the usual creepy sensations. I remember writing on here asking if other RLS sufferers experienced pain and was advised to get my knees x-rayed. Twice since then my knees have been x-rayed and each time I have been told that there is nothing wrong with them. There is absolutely no pain in the day but horrendous pain as soon as the RLS symptoms start. This pain varies from leg to leg, sometimes left leg, sometimes right leg or sometimes both. All I take now is Oxycondon and have been told to go up to 10ml. I have stopped at 3ml because taking opioid worries me. It holds the pain away for about 1& half hours. My question would be - why did my symptoms change from non- painful to painful? Did the long-time use of DA’s cause this?
It definitely needs a lot more research and funding.There were zero treatments for MS in 1994 when I was diagnosed. Now there are at least 6 very highly effective drugs and around 20 others. New drugs are being developed all the time.
More people have severe RLS than MS.
Money and research is what is needed to transform treatment.
But first we have to get the medical profession to take RLS seriously. It is NOT fidgety legs.
Not only for them to take seriously but to actually understand it! Know it!! Own it as a REAL dis “ease”!!! The medical profession knows nada about it! Except the RLS research doctors! My daughter went through the physician assistant program here in USA she said they spent 5 minutes in it!! It was “ mentioned” in her book!! They’ll tell you ohh I heard of that!! Hahaha jokes on US!!
Totally agree. Same here in the UK..RLS isn't on the medical curriculum. The UK charity, RLS-UK backed a campaign to get it taught. The medical authorities rejected it.It really is appalling.
Briefly - I’m a 76 year old female and I’ve had RLS for over 60 years. I remember that in my early teens I’d sit with my family in the evening punching my knees to stop the irritation. My GP said recently that my back problems are complex and he’s not wrong! I have many issues with all that area but noticed a couple of years ago that the RLS had moved to an area roughly around and deeply under my right sacroiliac joint. I have other pain in that region but, oh my goodness, the pain that comes with RLS is beyond describable. I just don’t know what to do when it hits - just o/d on Tramadol. I found Tramadol years ago after an operation, asked my GP for a prescription and I’ve taken it ever since. I can’t pinpoint the place where my RLS and pain come from but I feel that if I could get a long-handled spoon I could just shove it in and scoop out the horror. I’ve long considered mine to be a nerve type pain, when I have it the pain is overwhelming, but when I mention it to any doctors (including a pain consultant) they don’t react at all. Now I find I’m not alone! Thank you for your post.
You write as if it were that simple - just walk into the surgery and tell the doctor what I want and he’ll prescribe it!! Last year I was in agony with sciatica and badly needed stronger pain relief, did I get it? No!
Hi Jools. I had this discussion with someone else, but here goes. Tramadol is a combination opiate and SNRI and actually upregulates our receptors. As usual, I’m the know it all. I believe the RLS medical community is once again sadly mistaken thinking it causes augmentation. The eventual increased symptoms while on Tramadol is caused by its SNRI component, not augmentation. It may very well be the best opiate out there for us. I have to think about that. researchgate.net/publicatio...
Hmmm, I think I’m gonna post about it. It’s too important. We can’t sit on our hands and pray the RLS medical community figures these things out. The non-RLS medical community has analyzed Tramadol in depth and seem to give it a big thumbs up. I knew a year ago that Tramadol is a combination opiate and SNRI and good for our receptors and I dropped the ball. Not gonna happen again. “God helps those…”(and I’m not even a religious woman sorry to say).
Why sorry? Here in the UK, most people now describe themselves as non religious in the census. I suspect tramadol is another med that might work well on DA naive patients. But anyone with dopamine receptor damage from years on DAs instantly suffers.
Like you, I have sciatica and RLS, both only in my right leg. I can't always tell which is which, and maybe the question is moot. It's worse at night--I get the urge to move plus a revolving electric shock of pain. After the sciatica was treated the RLS calmed considerably. Neither condition is gone, but I think pain can cause a feedback loop that excites RLS nerves somehow.
You're correct. I shouldn't assume your doctors will be helpful in switching you to a different low dose opioid.Hopefully, within the next 10 years, RLS will be on the teaching curriculum for doctors, and there may be better treatment.
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